In March 2011, I wrote hereof Private Eye’s disturbing piece about the way in which the Alzheimer’s Society had closed down 240 regional branch committees, merging them into large regional centres, and then apparently seizing control of all the funds in those branches, and also branch property. (No. 1284; 18 March 2011 – 31 March 2011; page 30.) The Alzheimer’s Society didn’t care enough to reply to Private Eye’ article Fund razing, as far as I can see.

The Alzheimer’s Society funds, operates and manages an “online support and discussion forum, for anyone affected by dementia. It’s a place to ask for advice, share information, join in discussions and feel supported.” Allegedly. The forum is currently sponsored by Santander, with Tesco somewhere in the background, plus a few other sources of funding. Probably Bupa, and many other care providers.

There was quite some discussion hereon the Alzheimer’s Society forum about the closure of local branch committees and seizing of funds from local branches. 168 postings in total, so a fairly lengthy thread on the forum, with many questions being asked but many soft-fudge replies being given by the Alzheimer’s Society. Then, before you could blink, the thread was locked, closed to further comment, because long-serving and loyal members of Talking Point – the name given to the so-called ‘support and discussion forum’ – were not happy about the platitudes being dished out to them by the Alzheimer’s Society. They were confused, upset, fed up and disgruntled. Many of them no longer support the Alzheimer’s Society or post on Talking Point.

A few weeks later, Private Eye (No. 1289; 27 May – 9 June 2011; page 30) reported that even more volunteers were being driven away from the Charity, with new breakaway groups emerging. One group apparently wrote to the Alzheimer’s Society complaining that it was “utterly unacceptable and unforgiveable to write in such disdainfully bureacratic terms to anyone, let alone a group of women who have given so much of their time, energy and devotion to the very society you represent”. Alun Parry-Jones, a former Alzheimer’s Society committee member was the chair of that breakaway group. He also said “the society should be ashamed of driving out ‘the expertise and dedication of this group of stalwarts’.” That piece was published in Private Eye under the banner Voluntary redundancy.

Again, the Alzheimer’s Society didn’t care enough to comment.

Now, Private Eye features a piece on the £2.4m given to the Alzheimer’s Society to train one million ‘dementia friends’. The Eye (No. 1328; 30 November – 12 December 2012; page 30) headlines its piece with the words Sick joke. Ernie Thompson, who started the old Sunderland branch in 1987, said “That the Society is now being paid to find new volunteers as dementia friends looks to me like a sick joke. It was what we had been doing for years – only to be summarily dismissed”.

I wonder whether the Alzheimer’s Society will care enough to comment on that one.

It appears that the Alzheimer’s Society neither supports nor wants freedom of thought and actions where dementia is concerned. It only supports freedoms that the Alzheimer’s Society finds acceptable. The Alzheimer’s Society is strangling its members. There is now even an unbelievable attempt to control the way people write their posts on its Talking Point forum. Posts are edited behind the scenes without prior discussion with the writer of the posts, and often leaving no visible trace of the reasons for editing; words are changed or removed from posts without discussion; mention of moderators’ actions is not allowed; people are gagged when they dare attempt genuine discussion.

Salaried employees of the Alzheimer’s Society are paid to delete all mention of tragedies such as Winterbourne View. Every single mention of Winterbourne View has been edited out – and there were many. The words “Winterbourne View” no longer appear on any post on that forum. The disgust felt by reasonable people when the tragedy of Winterbourne View became known has been the catalyst for potentially huge improvements in the way care is provided to vulnerable people. But it never happened, as far as the Alzheimer’s Society’s online support forum is concerned. Terry Bryan would be more than upset, I fear, and rightly so.

Censorship has deleted Winterbourne View. Alongside many other things deleted by the Alzheimer’s Society.

They’re not my stories – they are articles published by Private Eye. I can’t post a link to those articles, because Private Eye doesn’t make them available online, but I’ve given references to the sources. I’ve reported them exactly as they appeared. The only additional comments from me are about the Alzheimer’s Society’s online forum.

I would so much like to be able to answer your question. I can’t. I’m also lost for words. It’s true – it is what we have allowed to happen in our world. Not that we individually can do anything at all to change this.

I urge you to look at this debate currently on the Alzheimer’s Society’s support forum.

The thread is entitled “Despair and Outrage” – and that sums up most of the kind of things posted on that forum. Again and again and again. Turning everyone round and round in circles.

But still a moderator has to shout about the Terms and Conditions of this particular Alzheimer’s Society’s forum.
“3.9 Please do not post medical, legal or financial information in an advisory capacity. Alzheimer’s Society aims to remove such content, but has no obligation to do so. ”

followed by

“The reason being, of course, that unless they are from AS or have received permission from AS we have no way to know if they really are a professional in their field (or if they are, if they are any good at it ). ”

No problem with the need to check out credibility – but where is the checking of credibility of any of the other Professionals posting on the forum? is it displayed against each and every one of their posts? No.

Another comment from a member of the Alzheimer’s Society’s online forum: “Some TP posters who are passionate and want to reform, run foul of the rules and regulations of this site which are there to maintain the primary purpose of the site and then these people are no longer allowed to post.

The rules and regulations are the Terms & Conditions of being allowed to speak freely. Unless you read, learn and inwardly digest each and every single T & C, you may fall foul of them. Then you will no longer be able to support those who genuinely want to shift the world of dementia care from reverse gear into 4th gear.

Cruise Control for dementia will not get a look in, as long as Censorship continues.

Yes, AS indeed is unfit for purpose- resembles social services in many respects.

If you do not want to hear what people at the hard end of caring have to say without ‘conditions’ which are clearly draconian to free speech; just let the ‘system’ think it is OK, (well AS has just done the ‘big deal’ with the system so what do you expect), then why pretend you care.

Note TP has had only around 25,000 membership since inception- a drop in the ocean to the near million or more with Dementias, and worse its active group is little more than 1000. What do you expect with moderators called ‘carers at a long distance’ who live in other countries. Farcical when you think about the 24/7 care that many on TP are stressed about , or the daily visits to care homes to check up on the standards of care by many, etc.

There is a need for dementia carers to have their own separate ‘voice’ with which to really lobby for serious care. Unless this happens only the voice of TP and Carers UK will be heard as the ‘definitive voice’ which they are not. Even the research that does exist is about the health / work issues pertaining to ‘significant carers’.

There is precious little serious large scale, significant in depth work to look at the experiences of those who as carers have ‘fought’ a harmful health and social care system. This is the only way.

Anne Clwyd has personally recently done to expose her own experience. She is chairing an all party committee looking at front line social work experiences at the behest of BASW- you would think she might want to hear the damaging stories surely? Get your letters to her.